- have very limited hand/arm stamina
- currently picking my face and vaping (audhd)
- have some fidgets but they aren't helping (not satisfying, tiring)
-Any ideas, whats worked for you?
My condition is getting to a point where I am considering pursuing medical interventions to help support the basic tasks of life.
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In researching this topic, medical professionals seem extremely risk averse when considering escalating treatment, often only considering intervention as the very last resort, basically when their hands are tied.
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None of the professional guidelines adequately capture fatigue, pem, quality of life, preserving function and pacing as clinically meaningful deciding factors when determining to escalate care, nor is an assessment done if continuing with lower levels of care will have a detrimental impact on quality of life and functioning long term.
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What are your thoughts or experiences of the following interventions for severe me:
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- peg (meds, food, fluids)
- port (fluids)
- suprapubic catheter
- colostomy bag
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Do you feel all previous steps of care need to have proven to have ENTIRELY failed (not just nearly impossible, extremely difficult or inconsistently able) to be considered for these treatments? Are these standards reasonable/realistic when applied to the mecfs population?